Friday, February 28, 2014

Day Of Mourning

Saturday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.
Autistic Self Advocacy Network - February 24, 2014

Some facts from the Autistic Self Advocacy Network:
"In the past five years, over forty people with disabilities have been murdered by their parents."
"In the year since our last vigil, our community has lost at least ten more victims."
"In January of 2014, two more disabled people were lost in murder-suicides at the hands of their parents: Damien Veraghen, age nine, and Vincent Phan, age twenty four."
The deaths are bad enough. The reason disability activists are angry about them and having vigils is how the deaths are often portrayed in the media and treated by the judicial system.

Too often, news stories portray the killings with more sadness than outrage. It's sad, you see, that the murdered person had such awful, trying disabilities that their caregiver just couldn't take it anymore. The there's my personal favorite situation ... where the killer is a very old man or woman and the disabled "child" they kill is a 50 year old adult who has been "cared for" by just their parents their entire lives. It's sad because the poor old man or woman just didn't know how their baby would be taken care of when they die. Far better to kill them now than to have them cared for by *gasp* strangers!

Then, juries and judges seem to go out of their way to lessen the consequences for the killers. The law can't condone murder, no sir! But, wink, wink, shake of the head, we understand. NO ONE can know how hard it is for caregivers, so who are we to judge? He was a saint to dedicate his life to this person to begin with. It's sad that in the end he cracked, but what's to be gained by punishing the poor old guy?

The thing is, a lot of these sentiments make sense, once you view the person murdered as something less than fully human ... a dead weight “vegetable", a bundle of unsolvable logistical problems, or a screaming, irrational hurricane that simply won't act normally, ever! Except that they are all fully human, with self awareness and points of view. Where is the outrage for their loss of life, the end of their existence and potential?

Still and all, I don't care, frankly, about seeing these killers literally punished for what they have done. I care about the message it sends when they are let off the hook in the public consciousness.

Organizations involved in the nationwide vigils include:

The Autistic Self Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, and the Disability Rights Education & Defense Fund.

Check the article linked above for a list of places holding vigils on Saturday, March 1. You can also participate in a “virtual” vigil via a Facebook Page.

Thursday, February 27, 2014

Sex And Disabilities: Followup

Well, here it is. Laci Green and her friend Olivia discuss Sex and Disabilities.

My first reaction? Big thumbs up. I am so impressed with how much diverse ground they cover. I especially appreciated Olivia admitting that she’s less able to talk about sex and people with intellectual disabilities, since that kind of disability isn’t her personal experience. That said, I think she was probably right to say that the main issue is consent, and then Laci suggested that it would depend on the individual … which is probably always a safe answer when it comes to sex in any situation. I will be curious to see what others with disabilities think of this video. It was way more specific than most of what I have seen and heard on the subject. Most commentary doesn’t go beyond just saying, kind of annoyed, “Of course we can have sex!”

More like this please!

Seriously? ... Again?

Heather Alexander, Houston Chronicle - February 26, 2014

The headline says it all. It is going to take a long time for some people to get used to the fact that guide dogs aren’t the only kinds of disability service animals, and that they all should be allowed in public places, even those that otherwise have “no pets” policies.

Apparently this is partially a Texas thing, because Texas actually passed a law specifically making it a misdemeanor to bar service animals, including those for veterans with Post Traumatic Stress Disorder. Gov. Rick Perry, surely a friend to business and as old-fashioned conservative as they come, apparently supports and is proud of this law, but a series of incidents seem to show there are skeptics out there.


Sex And Disability

Two young women smiling and facing the camera. Left has long, wavy blonde hair, wears glasses, and is somewhat crouched down. Right has medium blonde hair with pink highlights, glasses, and is sitting in a power wheelchair
From the Sex + Tumblr blog, via Sunshine, Been Keeping Me Up For Days.

The photo caught my eye, but this isn't really a photo post. The young woman on the left is Laci Green, who has a really well put together YouTube Channel called Sex + a frank video series about sexuality with Laci Green, where she gives information and advice on sex and sexuality. She apparently is working with her friend on the right on a video segment of her show on sex and disability. I like that they’re asking for people with disabilities to send them questions.

I also liked one of the topic tags on the post where I found this … that says: HOPING THIS WILL BE GOOD AND NOT TERRIBLE.

I think I know what she means. It could be really amazing, or it could be cringe-worthy. I went to Laci Green’s YouTube Channel and watched some of the videos. They are very frank, very “sex-positive”, and as far as I can tell, very responsible and accurate. The key to making this all appealing is probably her fun, feisty tone.

So, I’m optimistic. The only possible drawbacks I can imagine finding in her sex and disability video are:

1. If it is so pitched to young people that oldsters like me might find it alienating, and

2. If it is so pitched to women alone that guys like me might feel left out of the discussion.

I would have no objection to either of these if that is the usual nature of this channel. And I’m sure I’ll learn something interesting no matter what. But it would be really great if the video includes a hetrosexual male perspective … really all gender and sexuality perspectives … and maybe has a word or two for older folks with disabilities on returning to a sex life, or perhaps beginning a long delayed sex life.

Yes, one could make a whole blog about sex and disability, and not run out of topics for years.

Wednesday, February 26, 2014

Photo Of The Day

Black and white photo of a woman sitting in a manual wheelchair, closeup focus on her hand pushing the rim of the wheel, her hand wears a long white gloved with frills, looking like part of wedding dress
From the Ibrahim Alghamdi Tumblr blog, via The Lame Dame.

Thank You Gail Collins

Advocacy topic icon
Gail Collins, The New York Times - February 19, 2014

It's rare for well-known, "mainstream" Op-Ed columnists to write about disability issues. It's even rarer that they get it completely right. That's partly why I was so pleased to find a link to this Gail Collins column about the UN Convention on the Rights of Persons with Disabilities (CRPD), on Andrea Shettle's Tumblr blog.

I especially like that Collins gets specific about what has so far kept the United States Senate from ratifying this convention. It isn’t about the generic “Do Nothing Congress” theme, although it is a variation of it. It has little to do with what is in the convention and what it would actually do. Rather, it has become another test vote for Republican Senators at risk of being "primaried" in the upcoming election by candidates more right-wing and / or paranoid than they are.

The two main "issues" with the convention itself are, as Collins correctly notes, about sovereignty, and parental rights. Or, to put it more plainly:

1. Certain very conservative Republicans have a long-standing distrust of the United Nations, which by its very nature they envision one day imposing laws and changes on the United States. This disability rights convention is to them just another potential wedge for foreigners to meddle in our business, so they want Senators, especially Republican Senators, to vote against it on anti-UN principle.

2. Certain other (sometimes the same) very conservative and Evangelical Christian Republicans are afraid that a particular phrase in the convention opens the door for the UN to overrule what parents choose to do with their children with disabilities. It seems like one specific thing they worry about is that the UN will someday determine that homeschooling is bad for disabled children, and somehow use that to curtail homeschooling in the United States.

The first objection is just the latest version of a sort of "constitutional" objection that is as old as the UN itself. People of a certain political bent have never liked the United Nations, and distrust the notion of “international law” on principle. They are nationalists who believe that the United States should never in any way acknowledge any authority higher than our own Constitution … even symbolically or for practical reasons like diplomatic cooperation and world peace.

The second issue is a little more complex, but only a little. Homeschoolers, especially, (but not exclusively) Evangelical Christian homeschoolers, feel looked down upon and threatened by the education “establishment”. While some homeschool because they don’t like aspects of public education as it is practiced, others basically don’t like the idea of any “so-called experts” telling them how to raise and teach their kids. Since public schools generally don’t see it as part of their mission to inculcate religious values in children, some Evangelicals opt to take their kids out of the “system” entirely and teach them at home, something that United States law does allow them to do. A somewhat side group of parents have a different problem with schools. Since schools still often do a poor job of handling disabled children, some parents decide to give up trying to improve Special Ed through advocacy, and simply decide to go it alone with their kids, believing that they, the parents, know what’s best for for disabled children.

So, you have two groups of homeschooling parents, groups that only partially overlap, who hear government-type agencies talk about “the best interests of the child” and take it to mean that if some academics and politicians don’t like how they raise their kids, then the law will eventually force them to give up their authority over their children and subject them to an education system they don’t agree with and even fear. They see an international agreement like the CRPD as a stealth way to someday circumvent US laws that so far at least do protect “parents rights”.

Of course, the purpose of the CRPD isn’t to change how the United States deals with disability issues, but to bring other countries closer to how American law currently does. There’s no point in beating around the bush here; we’re talking quite often about Third World countries, and possibly Eastern European countries … which often have cultures with pretty outrageous notions about disability, and / or infrastructures where accessibility is unheard of. And even if down the line, someone were to try and bend the CRPD to make legal changes in US law, it is vanishingly unlikely to ever happen under our current relationship with the United Nations. The US has veto power in at the UN. The only thing we have ever done at the behest of the UN is go to war, and then usually because we got the UN to vote for military action in the first place.

Opposing the CRPD on these ground is high-level jumping at shadows. It is also an insult to the many Republican Senators who aren’t big UN fans, but see this convention as something worth doing. Worst of all, it has caused the United States to symbolically disavow one of the few areas in which we truly are more advanced than much of the rest of the world.

The other problem is that the stakes are so low, in a political sense. It’s just not a big enough deal to get anyone upset in favor of passing the ratification. That’s why someone like Gail Collins writing about it, and well, is so important.

Tuesday, February 25, 2014

Video Of The Day

My Gimpy Life
Episode 7 - Also, Teal Too

“Growing Up Fisher” Followup and a TV Idea

This might be another light blogging week for me, because of other stuff I’m working on. For today I just have a couple more TV-related thoughts:

1. I forgot to mention yesterday that the pilot episode of “Growing Up Fisher” included a pretty good scene referencing guide dogs being excluded from some public places. The blind dad, Mel Fisher, is moving into a hotel because of his divorce. The desk clerk sees Mel’s guide dog and says he can’t be in the hotel because they have a “no pets” policy. Mel says it’s a guide dog, and the clerk just sort of repeats the “no pets” policy. That turns into a bit where Mel and his young son do what seems like a routine they’ve done before in instances of discrimination … Mel (a lawyer) cites the applicable laws, and Henry tells the clerk that his dad is a lawyer and will sue them “so hard” that the hotel will end up being named the Fisher hotel. All that snarky advocacy was pretty cool, but what I really liked was how the desk clerk heard them say guide dogs are allowed in “no pets” establishments, but its like the fact didn’t sink in. He just repeated the policy like what the customers said was some strange non sequitor. I wonder how often these cases of service animals being banned from places are situations where the staff literally aren’t processing what they are being told? I mean, maybe they get it the second or third time, (“Oh, I see what you mean!”), but by then they’ve already crossed that line into outrage territory, and next day we’re all blogging about it.

2. If someone in TV wants to try making a high-quality show about disabled people, they should start it out in some kind of nursing home or care facility, and focus on four or five youngish residents who each have a somewhat different disability, or combination of disabilities. One or two seasons could be an arc of them becoming friends, gradually realizing that instead of complaining about shit in the facility, they should try to move out of it. Then the rest of the series, however long it lasted, could show the gang living together in a shared apartment, helping each other deal with all the usual problems disabled people face. Of course a lot of the show would have to be about their interpersonal relationships, non-disability-related interests, their families, non-disabled friends, their sex lives, etc. I’m thinking all this will half-watching Season 3 episodes of “Girls”, so that’s another way to get the flavor of what I’m thinking about … i.e. there would be nakedness and swearing, but also Indie Music and feelings.

More about this another time, I think ...

Monday, February 24, 2014

Photo Of The Day

Photo of young woman with long blonde hair and a mermaid costume on her lower body - she is seated in a wheelchair
From the Sooo Yeah, Anyway Tumblr blog, via Independent and Visible.

"Growing Up Fisher": Untapped Potential?

picture of an old-style tv set with the disability symbol on the screen
This is what one of my favorite TV critics, Mo Ryan, wrote about the new NBC sitcom, “Growing Up Fisher”:
"This show is formulaic, slightly frantic and relies too much on unearned sentiment. Every line rings false and every character feels contrived (Henry's best friend is a cartoon-y character straight from a grating 1994 sitcom). Jenna Elfman is wasted in an undercooked role as Henry's mom, and this is a weird gripe, but I'm very tired of comedies (like "Fisher" and "Mixology") that are overlit. What, you want us to be able to clearly see that the shows aren't very funny?”
That sounds pretty bad, and I’m not going to leap to the show’s defense. I’m not quite ready to give up on “Growing Up Fisher” … I’ll probably watch a few more episodes at least to see if it becomes more interesting … but it certainly feels generic to me. It’s the opposite of so-called “prestige” cable dramas like “The Sopranos”, “Mad Men”, or comedies like “Girls” and “Veep”. It looks and sounds like it has been lifted from the early ‘90s. The characters are quirky, carefully not too quirky, strange, but familiar enough that they will never cause confusion or real WTF moments. The show isn't bad, it’s just not very good. I can imagine many people flipping channels and settling on this show. I can't imagine anyone thinking, "How many more days until the next episode?"

Poster for TV show "Growing Up Fisher"
I do have some thoughts the only thing that is potentially interesting about the show ... the main character's blindness. Mostly, I have questions:

- Is it remotely realistic that a middle aged man, blind from early childhood, could, or would, keep his blindness a secret all through his adult career? Will the secrecy theme serve an ongoing purpose, now that it looks like he’s “coming out” as blind?

- Will we get to find out why Mel originally kept his blindness a secret? Did he have bad experiences with teasing or discrimination as a child? Did someone convince him early on that blindness looked bad in the professional world? Did he get wrong-headed advice from questionable experts? Was he just plan ashamed? If so, what made him decide to be more open about being blind? Will that be a difficult adjustment for him? He seems like a very confident man. Will that be shaken by how people react to his blindness?

- The main joke about Mel’s blindness, other than hiding it, is that he takes great pleasure in doing things you would least expect a blind person to do … like driving a car or cutting down a tree with a chainsaw. I suppose that’s better than if they depicted him as clumsy and accident-prone, but I wonder if they will dig into that a bit deeper. Will Mel start to find that while its cool and impressive to water ski or skydive or whatever, it’s more useful to be able to do ordinary things and not depend on your 10 year old son all the time? It seems like they are going in the right direction for something like that, but I can’t tell if they’re going to make the most of it.

- The most interesting part of the first episode was Mel’s young son Henry feeling like he isn’t needed anymore when Mel gets a guide dog. I hope the show continues to explore how Henry has acted as his father’s helper, and how it changes their relationship when Mel starts to be more independent and open about his blindness.

- It seemed like the was a slightly novel twist on the old idea of fathers who tell the same old stories about their childhood hardships, with Mel telling his kids that they can achieve anything, after all, “I went to law school blind!” His daughter Katie, who seems to be a 16 year old, seemed for a moment like she was about to answer back by asking why that’s supposed to be such a feat, but she didn’t. I really hope Katie will be someone who sees through Mel's heroic, over-achiever facade. It wouldn’t be insulting to disabled people, it would be a joy to see a tired cliche taken down a peg.

- Mel just comes home one day with a guide dog, surprising everyone. In real life, you can’t just go and buy a guide dog. It takes months of arrangements and training, something his family would have had to know about. Okay, maybe that’s a nerdy detail that’s fine to gloss over for story purposes. But the disability experience is all about details like this that are massively important to disabled people, and quite unfamiliar to non-disabled people. If you’re going to show what disability is like, and do more than make jokes about it … which the writers of “Growing Up Fisher” seem to want to do … then do it right. Above all, don't be afraid to explore the very real dilemmas of living with a disability. A positive, progressive portrayal doesn't have to imply that life with a disability is problem-free.

Which leads me to ask a more general question about disability on TV. The disability community has talked a lot about how rarely disabled actors are hired to play disabled characters. What about hiring disability consultants? “ER” famously had it’s medical consultants, why not hire a blind person to provide ongoing advice and “disability direction” to a show like “Growing Up Fisher”? I would imagine such a consultant in the writers room would have said a few times, “Yeah, that would never happen”.

A blindness consultant could also help the show take full advantage of it’s disabled character. There’s a lot to explore here, and it doesn’t all have to be deadly serious, either. There’s plenty of room for humor with a heart, and a mind. I’m just afraid that the show’s creators either don’t know what they have, or are too afraid to use it.

That seems to be a common problem with disability on TV.

Saturday, February 22, 2014

Paralympian Jessica Long Goes Home

Credit where credit is due. NBC did a wonderful job with the profile of Paralympian Jessica Long, showing her visit with her biological parents in Siberia, Russia. The segment, which just aired, was beautifully done and made me cry. I’m not sure which affected me most, Jessica meeting her Mother, or meeting the now elderly women who ran the orphanage where she lived until she was adopted by American parents.

Jessica also had very meaningful things to say about understanding why her parents gave her up for adoption. They were under age, unmarried, and they felt ill-equipped to handle a child with disabilities. You could see the absolute mix of pain and joy on the Mother’s face when she saw her grown daughter Jessica. Parts of this this world are very harsh places, and people try their best to do what they feel is right. It’s great that Jessica Long got to tell her biological Mother that she understands, and that she loves her.

Photo Of The Day

Young woman in wheelchair, with blonde hair highlighted with blue, wearing turquoise Converse high-tops, red shorts, black tank top, sitting in a wheelchair

3 Rebukes To Bullying

I can't believe I'm saying it, but these three videos are inspirational! I mean “Inspirational” for real. Not “Inspiration Porn”, not revoltingly sweet, not begging for sympathy. These videos move me, and have something of substance to say. The second two I have posted before. The first one I saw just today, from a link and recommendation by the founder of the website Shared Abilities.

"Beautifully Different by Charisse Hogan"

This very personal video is the one that comes closest to what I’d call a traditional “Inspirational” video about disability. It expresses a simple, positive message in a heartwarming, non-confrontational way. It has pleasant music and adorable kid drawings. However, several things about this video set it apart and gives it bit of a sharp edge.

The underlying theme, bullying, is anything but cheerful or simplistic. She doesn't hold back from telling about the worst, with specifics.

Charisse’s positivity is totally earned and authentic. She has been through horrible experiences and is recovering, which can’t be easy and should not be taken lightly. Her optimism isn't glib.

The video makes it clear that the horrible experiences were caused by other peoples’ behavior, not by Cherisse's disability. Her understanding of this may be a little bit unformed just yet, but she’s young, and clearly on the path to viewing her disability as a part of herself she doesn’t have to be embarrassed about or ashamed of. I can't avoid being a little personal and paternalistic here. I recognize so much of myself at her age in Charisse. At the same time, like a parent, I want to tell her about all the amazing opportunities for further growth and pride that are available to someone as poised and smart as she appears to be.

"Fucking perfect anti bullying"

When I first realized that Charisse’s video was about bullying, I immediately thought of the “Fucking perfect” video, by an amputee YouTuber who is: a. Around the same age as Charisse, and b. has been bullied and made a video to address that. It is very striking that the messages of the two videos are almost identical, but their approaches are so different.

Using the words of the Pink song, this video is positive but also confrontational. It's not just because the word "fuck" is used. With or without that bit of judicious swearing, it is defiant. I don’t know much of anything about this young woman, any more than I can say I know about Charisse, but I could well imagine that this girl might have both fans and detractors among her high school teachers. Whereas Charisse strikes me as the kind of kid all but the most burned-out teachers love, I can see this young woman pushing the envelope from time to time. Hopefully, there are teachers, family, and friends around her who can appreciate a disabled person who isn't cheerful 24/7, who bites back on occasion.

Neither of these young women is better or more “appropriate" in her approach than the other. In fact, what’s so satisfying is that based on their videos, I like and respect both of them so much, each for different reasons and in different ways. It's a cliche I suppose, but they seem to represent the Yin and Yang of disability pride.

"Pro Infirmis «Because who is perfect?»"

Meanwhile, the "Pro Infirmis" video is in some ways a rebuke to a more passive, adult version of bullying … the fear, loathing, and rejection of disabled bodies. More importantly, the video focuses on the fact that even the people who have disabled bodies often subtly buy into the prejudices against them.

I think it helps to know, too, that the participants are all successful professionals in Switzerland, where the project took place. So, each of them, arguably, is already among the most confident, self-actualized disabled people in their communities. Yet, they all are so clearly moved and changed by seeing their mannequins unveiled. For a moment, the hidden wounds of low self-esteem are revealed, then almost almost immediately afterwards healed a bit by seeing and touching the mannequins. As I mentioned when I first posted this video, seeing one of the models actually give her mannequin a hug and a pat just about made me cry. This is sentiment much deeper and more profound that surface sentimentality.

People of all kinds crave inspiration and empowerment. While I will continue to call out “Inspiration Porn”, I don’t want to become hardened and cynical about all efforts to convey positive messages about disability. It seems like there are certain techniques and themes that make for really moving videos about disability, that are truly empowering and not exploitative or sentimental.

One key I think that I haven’t mentioned is each of these videos was either created by people with disabilities, or featured genuine, candid responses from people with disabilities. They are not passive objects in these videos, they have unique, individual voices. That makes all the difference to me.

Friday, February 21, 2014

The ABLE Act - A Game Changer?

Advocacy topic icon
Michelle Diament, Disability Scoop - February 21, 2014

If passed, the ABLE Act would allow people with disabilities to accumulate up to $100,000 for major expenses, without losing eligibility for Medicaid and other benefits that currently depend on keeping assets extremely low. Many of the most important support benefits require keeping any savings below $2,000. This not only prevents people from saving for future needs and major investments in education and adaptive equipment, it also is a major disincentive to people with disabilities attempting to work and earn their own living.

Picture of a plant growing out of a pot, with a dollar sign in the foliage, with a hand water it with a watering can
A quote from the Disability Scoop article I think hints that lawmakers who support the ABLE Act now understand something fundamental about benefits and people with disabilities. Sara Weir, of the National Down Syndrome Society says that the ABLE Act would allow people with disabilities to, "go out and get a job and pay for their own expenses and not be so dependent on the federal government for everything.” This is key. It’s not that we would no longer need government benefits for anything, it’s that we wouldn’t need them for everything. Think about what a huge difference that potentially makes.

My worry is that the Congressional Budget Office report will say that this would make thousands more people eligible for benefits, and therefore cost the government a lot more money. We need to prepare to argue either that the cost isn’t that big, or that whatever the cost, it is justified and at least partially counteracted by the increased economic activity of more of us working and paying taxes.

Where does your Representative and Senators stand on the ABLE Act?


Do use the link in the Shared Abilities comment below to find out your Senators and Representatives' positions on the ABLE Act, and to sign the ABLE Act petition.

The Sound Of An Australian Accent In Your Head

Stella Young, ABC Ramp Up (Australian Broadcasting Corporation) - February 5, 2014
"Sometimes I just want to go out for dinner with my friends and go to the loo without stressing about it and without having to complain to staff, write emails and consider an inevitably ineffective DDA complaint. I want to go to parties without the nagging anxiety that my access requirements will mean I have to bail early. I want to accept invitations without interrogating my friends."
This is the best written piece about accessibility I have ever read. That is all.

Accessibility Fail

Three photos of poorly designed accessibility features. Left photo is of a long ramp with a tree growing out of the middle. Middle photo is of a curb ramp and crosswalk to the opposite curb ramp, but with he path blocked by a median. Right photo is of a long ramp that starts with two steps up.
See the full collection of “accessibility fail” photos at The Fault Is In Our Spoons Tumblr blog, via Demonically Disabled.

These botched accessibility features create practical barriers, and are probably the results of poor planning and management. What other messages can we interpret from these “accessibility fails”?
1. Your needs are not important. "We added this feature because someone told us we had to, but it’s not important enough that we put any effort into making sure it actually helps. It’s just a requirement. It says we have to have a ramp. We put in a ramp. Next? Nobody’s gonna use it anyway, you mark my words!"
2. Accessibility is entirely symbolic; it has no practical meaning. "See, we painted the wheelchair symbol on it. That means it’s accessible. And is shows we care!”
Maybe there are other explanations. Maybe we disabled people over-interpet goof-ups or anomalies. Maybe we take things too personally. Well, maybe. But I remember when I used a mobility scooter in college, running across weird spots like these, and I would feel strangely affronted. It really did seem like a message ... You build everything else with such care and craftsmanship, but something that's for me and mine, you couldn't be bothered to do correctly. Got it!

Getting accessibility right is easy. You just have to be willing to do a little bit of research and ask for help.

Complete, detailed accessibility standards are available on the Internet. Your best bet is the ADA Standards for Accessible Design. Most parts of the standard are easy to understand for anyone with a bit of simple building and repair experience. For an experienced contractor or designer, consulting the standards is a worthwhile backup to their professional knowledge.

Don’t just rely on the standards, though, and don’t assume you or your contractor will know how to apply them. Even credentialed architects sometimes don’t understand the best way to make specific locations accessible. Before you build, ask a disabled person for input. If you don’t know someone with physical disabilities who can help, call your nearest Center for Independent Living. Most of the people who work at them have disabilities themselves, and many of them have staff hired specifically to help homeowners and businesses make places more accessible. They may charge you a reasonable consulting fee, but if you do things right, you should only have to pay for all of this once.

Accessibility matters. The way it's designed and configured matters. In accessibility, good intentions mean exactly nothing ... it is all about practical usability. A publicly opened building or space that isn’t accessible to people with disabilities essentially says, “We don’t care enough to welcome you here. Go somewhere else.” For a business, especially, that’s a deadly stupid message to send, whether you meant to or not.

Thursday, February 20, 2014

Winter Paralympics Schedule 2014 Paralympic Games logo
United States Olympic Committee - February 19, 2014

There will be relatively little on-air coverage of the Winter Paralympic Games, but I prefer to see the 52 hours of total coverage as a “glass half full” situation. Most importantly, the link above takes you to very good, easy to decipher charts showing exactly when and where you can watch live or taped broadcasts of each sport. It looks like the Opening Ceremony, several Sled Hockey games, and the Wheelchair Curling Final will all be shown during the day, and that NBC Sports Network will be doing a highlights show for each day of competition. Of course, you can see a bit of everything, mostly on NBC Sports Network, if you’re willing to get up in the middle of the night or super early in the morning.

NBC seems to be completely committed to the “human interest” approach to Olympic sports. It will be interesting to see if covering nothing but disabled athletes induces a full-on diabetic coma in all of the commentators. Or, will they go the other way and depict all the competitors as hard-bitten, fearless bad-asses?

Disability Rights In Russia: Video

Disability Rights In Russia

Photo of a woman with blonde, short, curly hair, facing the camera, sitting in a wheelchair
I saw this photo earlier this week, on the Disabled People Are Sexy Tumblr blog, and traced it to a Human Right Watch website on the disability rights movement in Russia. I set the photo aside and added the Human Rights Watch links to my link queue to read later.

I’ve been thinking a bit about the perception of Russia, prompted mostly by the Winter Olympics in Sochi, but also by Russia’s recently passed anti-gay laws, and more broadly, by the sort of back and forth confusion in Americans’ attitudes towards Russia I have seen since the end of the Cold War and the dissolution of the Soviet Union.

For one thing, people on opposite sides of the political spectrum in the U.S. have almost swapped sides in regard to Russia. American Conservatives spent the latter years of the Cold War trying to convince Liberals that Russia was the worst country in the world. Not only did they espouse the hated ideology of Communism, but as a people they were supposedly ugly, brutal, and backward. “All they respect is power!” we were told. Liberals, on the other hand, tended to try and reach out to Russia, to appreciate their history and literature, to put the Communist Revolution in historical context. We almost took the human rights problem for granted ... if not quite forgiven, then maybe a little excused.

Now, with Communism gone, some Conservatives seem to have a crush on Russia's current strongman, Vladimir Putin … he’s kind of a bad-ass, I guess. I, a Liberal watch Cossack policemen beating and whipping the brave but obviously unthreatening young women of Pussy Riot and really wonder, in a different way than Sting did in the ‘80s, whether, in fact “the Russians love their children too?”

All of which is just to say that I approached the topic of disability rights in Russia with all kinds of conflicting feelings, not all of them noble or fair. In short, I expected horror stories and ignorance in triple doses. What I’ve seen so far is more complicated.

With about half of the problems mentioned in the article, video, and website linked below … such as "Public buildings and transportation are often inaccessible” ... I thought, “That’s not so different from here in the U.S!” The other half, I thought, “Okay, that’s pretty bad. I don’t think that happens here … much.” We still see segregation into “special” classes in our schools, but a lot more than 2% of them are inclusive, mixing disabled and non-disabled students. And although peoples’ feelings and ideas about sexuality and reproduction can still be frighteningly discriminatory in the U.S., enforced abortion and sterilization are no longer considered anything like acceptable.

Still, the basic landscape and map of issues is pretty much the same in Russia as it is here. They need more buildings and public spaces to be accessible. Education needs to improve. People have negative attitudes towards people with disabilities that result in sometimes shocking acts of discrimination. It all sounds familiar. It’s just that it also sounds like Russia is maybe 20 to 30 years behind us on most things. That’s pretty awful for disabled people in Russia, but I’m not sure it’s boycott-worthy, or justifies any feeling of great American superiority on disability rights.

Except there’s one thing Russia has going for it that we don’t. Russia has signed the UN Convention on the Rights of Persons with Disabilities, and the United States hasn’t.

I have occasionally wondered whether the CRPD really matters anyway, since there is little anyone can do to enforce it in countries that sign it. It might be a cheap way for countries to score “credit” for being progressive on disability rights, without actually having to do anything about them. Having read more about the movement in Russia, however, I think the CRPD provides a valuable tool to compare words with deeds in a country that, leftover Cold War prejudices aside, does seem to have a problem following through on all the details of being part of the modern, democratic, egalitarian world. The CRPD provides a standard for Russia to meet. And, after all, unlike the pronouncements of the U.S. State Department, the UN Convention is something Russia chose to sign, so it will be hard for them to claim that disability rights measures are foreign impositions, incompatible with Russian culture and traditions.

I look forward to learning more about disability rights in Russia, a subject which should really be about people with disabilities in Russia, not about which country can claim moral superiority on disability rights issues. Maybe we’ll learn more when the Winter Paralympic Games start in March.

Wednesday, February 19, 2014

Photo Of The Day

Photo of a young woman with short brown hair and glasses, wearing a tan trench coat and business attire, sitting in an electric wheelchair
From the Wheelingalon24 Tumblr blog.

Policy Changes I'd Like To See ...

Ideas topic icon
Just thinking here ...

1. Allow people with disabilities who qualify for home care / personal assistance services to hire anyone they want to provide the services they need. They could hire an agency with lots of screening and training of employees, and that handles all the wages, taxes, and other administrative stuff. Or, they could hire friends, neighbors, college students, people who need work, or even family members … train them, supervise them, fire them if necessary, and pay them with the same money that would have been spent anyway for more traditional models of home care. Pieces of this type of “consumer-directed” personal care model are already in place in various states, but specific policies and practices are all over the place, and in many areas nothing like it is available at all.

2. Replace a lot of the current programs geared towards helping disabled people do specific kinds of things, with an annual grant of money that each person could use for whatever they want. This would be separate from income assistance like SSI and Disability, which is intended to help with everyday living expense for people who can’t work. These grants would be available to anyone with a disability that results in the need to spend substantial amounts on services and investments that non-disabled people never have to make. These could include things like home accessibility modifications, electric wheelchairs, (and / or wheelchair repairs), extra personal care or assistance, (either replacing home care completely, or supplementing it for help that lies outside the purview of home care), or vehicle adaptations. The amount of each person’s grant would be based on some kind of agreed upon list of expenses presented by the person each year, but the money could be spent however the person wanted, and there would be no more available until the following year, no matter what. So, there would be plenty of incentive for each individual to spend the money wisely, on real disability-related needs.

3. Raise the asset limit qualification for SSI and other government support benefits. I would raise it quite high, but I wouldn’t remove the limit altogether. Let’s say $100,000. In other words, assuming your ongoing income is low, you could still qualify for various benefits as a person with a disability if you had up to $100,000 in savings. This would encourage people with disabilities to work when work opportunities exist, and encourage them to save for retirement or anticipated big expenses.

4. Create a disability-based tax credit. This would be one way to deliver an annual benefit payment for major disability-related expenses. Except this would be even simpler and less individualized. Just decide a dollar amount for the credit, set an upper income limit if lawmakers thought that was necessary, (I would set it fairly high), and figure out a way for individuals to prove their qualifying disability. That last bit might be the hardest part of all to carry out, but this is another way to provide consumer-directed support and economic empowerment. It could also be designed so that you could only get it if you worked, making it another way to counteract work “disincentives” and make working worthwhile.

One thing all these ideas have in common is that they involve giving people with disabilities money, as a distinct alternative to giving them "programs". Give us money, and we will buy the support we feel we need, whatever that might be. For what it’s worth, “just giving poor people money” isn’t such a radical idea. A fair number of reputable economists think it’s a good idea. Also, it’s worth thinking carefully about what might be a likely objection to these ideas … variations on the theme that we can’t be trusted to be either honest enough or competent enough to handle these benefits properly. Some of us might, indeed, need some help with that, but do we really want so say that higher material needs means people with disabilities need more paperwork and “professional” supervision?

I think it’s worth thinking about.

Tuesday, February 18, 2014

Discussing TV's Disability Problems

Picture of an old-style TV with the wheelchair symbol on the screen
I was listening yesterday to this week’s episode of the Firewall & Iceberg Podcast, a TV review podcast by Alan Sepinwall and Dan Feinberg. One of the shows they discussed was the upcoming NBC sitcom, “Growing Up Fisher”. The show is about a father who is blind, as told by his son. It borrows a bit from “The Wonder Years”, as the son narrates a lot in voiceover as an grown adult remembering his childhood. The father is played by J. K. Simmons, not a blind person himself (yet again), but a pretty excellent comic actor. Jenna Elfman plays his wife.

One tidbit I picked up that I hadn’t heard before is that on the show, the father is said to have spent a good portion of his professional life hiding his blindness, and is now, for a variety of reasons I guess, starting to be more open about his blindness. I don’t know if this is a good idea or a terrible one.

What really interested me though was that both Sepinwall and Feinberg don’t like the show. They don’t hate it, but they are unimpressed. Mostly it’s because like a lot of recently failed network sitcoms, it’s bland and generic. But then one of them (I’m not sure which) said something telling. To paraphrase … The comedy might have been funnier and more notable if they’d done more jokes about the father’s blindness, but that would have run the risk of justifiably offending people. So, the writers soft-pedal the “blind jokes”, thereby avoiding offending people, but also leaving a possible source of stronger humor untapped.

To me, this suggests three things about disability on TV:

1. TV writers have a hard time making disability depictions distinctive and interesting, while avoiding offense. This may be because they don’t have enough direct disability experience, so they don’t really understand what’s interesting what’s offensive to actual people with disabilities.

2. Not casting actors with disabilities to play disabled characters isn’t just a problem of “representation” or “equal opportunity”, it may actually produce inferior TV shows.

3. We may not see a really great disability depiction on TV until one of the great TV auteurs pitches a show with disabled main characters to one of the cable channels like HBO, AMC, or FX.

Then again, maybe the problem is that TV reviewers don't understand disability depictions.

Video Of The Day

My Gimpy Life
Episode 6 - Day Jobs

The Difference Between "Awww" and "Awesome!"

Maggie Freleng, Huffington Post - February 12, 2014

Brittany Talarico, People Magazine - January 28, 2014

Rachel Cohen-Rottenberg, Disability And Representation - February 6, 2014

Both the concept of “Inspiration Porn”, and a parallel interest in rethinking standards of beauty and sexuality are lively topics in the disability community, and starting to gain some attention in the culture at large. So, an apparent contradiction is becoming impossible to ignore. Why do some photos of disabled people make us roll our eyes and gag, while others we blog and reblog because they’re “awesome”?

I have explored this before. For one thing, I still think that captions and slogans make a big difference. A picture without comment allows us to decide for ourselves what it “means”. Captions instruct us to feel a certain way about what’s in the photo, and usually, the caption is sentimental, shallow, or both. Occasionally, a caption will hit that sweet spot where well-meaning and offensive overlap perfectly. As hard as it is for someone to resist sharing their brilliant insights (believe me, I know), captions almost always turn otherwise cool or interesting photos into “Inspiration Porn".

The source of disability photos, and their intended audience matters, too. When a disability photo comes from a non-disabled person, and is aimed mainly at non-disabled viewers, it tends to look like “Inspiration Porn”. When a disability photo is posted by a disabled person, and / or is aimed mainly at other disabled people, it tends to feel different … more “empowering” than “inspiring”.

The exact intended message, (or apparent message) also counts. In “Inspiration Porn”, the message is often something like, “You think your life is hard, look at this person. He has these horrible disabilities yet he’s happy and successful!” This is based on the assumption that disability is always awful, so a person “suffering” from it who looks capable, attractive, and happy must be a remarkable person … someone to emulate. A related theme is that disabled people are assumed to be depressed and depressing, so seeing a happy, attractive disabled person is meant to be a surprise.

Fashion photos with disabled models and photo essays exploring the beauty and sexuality of disabled people also depend on confounding stereotypical expectations. “Awesome” and “empowering” photos are probably, if we are honest, distant cousins to “Inspiration Porn.” Yet, that’s not the effect they have on us, especially those of us with disabilities.

Danielle Sheypuk, the first model in a wheelchair to take part in New York Fashion Week a few weeks ago, (article linked above), says of disabled people being models in the fashion industry, "People with disabilities need to see it. It's a confidence booster.” I don’t know what effect these photos have on non-disabled people. I don’t even care, because I’m too engaged, too proud and moved, too busy rethinking my own body image and standards of what I have always considered attractive. Meanwhile, the Diesel ad featuring Jillian Mercado has been reblogged pretty constantly on my Tumblr Dashboard since the campaign came out. At least some of these same rebloggers have shown in other posts that they hate "Inspiration Porn", so the Mercado pictures obviously don't strike them that way.

One thing that Sheypuk and Mercado's projects have in common is that neither woman is "playing at" being models and looking fierce and gorgeous. They look totally natural in their clothes, makeup, and hairdos ... not made up like a Halloween costume or worse, someone who's been given some kind of "Make A Wish" experience. And the same is true of the men and women I've seen photos of in other body image photo projects, including people who's photos confront and directly challenge mainstream standards of beauty. These people aren't fooling, pretending, or being manipulated.

These are subtle differences, but important ones. Maybe they're as simple as the difference between "Awww!" and "Awesome!"  I’m sure sure we haven’t gotten close to figuring it all out yet.

Meanwhile, back to “Inspiration Porn” …

Rachel Cohen-Rottenberg of the Disability And Representation blog recently posted an hilarious series of reverse-inspiration porn photos, arranged to look exactly like the worst (and most common) Internet-shared disability pictures with “inspirational” captions … except that instead of disabled people, they show “normal” people, and the captions describe “normalcy” exactly the way disability is usually described. Even people who generally fall for “Inspiration Porn” without question will likely see the opposite point if they look at these tongue-in-cheek but very serious posters.

Finally, if anyone out there still questions whether we disabled people are being hypocritical about this … condemning “Inspiration Porn” one minute, posting “awesome” photos of sexy wheelchair users or amputee mountain climbers the next … I fall back on Walt Whitman to explain:
“Do I contradict myself? Very well then, I contradict myself, I am large, I contain multitudes.”
— Walt Whitman, “Song Of Myself"

Monday, February 17, 2014

Photo Of The Day

Three young men, all of them one-leg amputees using crutches, playing soccer
From the The Perks Of Being Disabled Tumblr blog.

What Will We Tell The Children?

Orli, Just Breathe - February 11, 2014

When I first saw this blog post, I immediately put it into my “to read” queue, because I’m fascinated by the question of when and how to explain to kids with disabilities about their disabilities.

I think it is one of the most important questions about raising kids with disabilities. In all honesty, it is a very emotional question to me, too. One of the few aspects of disability that has really upset me is when I have met children or youth with disabilities who did not seem to know much about their disabilities. Aside from not being able to explain them to others, I have felt like that lack of knowledge and understanding greatly undermines their self esteem and sense of mastery. So, I feel upset for them, and angry that for whatever reason they have been kept in the dark. Digging even deeper, I think that for me it’s all about the awful fear that people are thinking and talking about you completely differently than how they interact with you personally … sometimes known as being “two-faced”. To the child, it’s “Yay! You’re so awesome honey! Great job!”, while among people “in the know”, it’s “I’m terrified that she’ll never have a job, never live on her own, will always be like this.”

This is a nightmare scenario to me. Like all nightmares, it’s a distorted fear, exaggerated. But also like nightmares, it’s based on reality. For one thing, whether or not parents decide to discuss their child’s disability honestly with them, it won’t be a secret for long. “The world” will inform them, and not gently or thoughtfully. No matter how we process disability as adults, disability isn’t great news. How do you prefer to get bad news, from a random stranger, or worse, a work colleague you dislike, or from someone you love and who loves you? And just to up the stakes even higher, random strangers and semi-hostile acquaintances often don't tell you whatever the bad news is … they just look at you weird and talk about you behind your back.

Obviously, then, I have a bias in favor of disclosure and honesty about disability with disabled kids, and realistically, it’s the parents’ responsibility. Nobody’s going to do it for you, nor should they.

That said, I am not a parent, and I don’t really know much about the subtleties of how to be honest and informative, at different ages, regarding different kinds and degrees of disability. So that pretty much ends this conversation for me, because I feel like I’ve been presumptuous enough towards parents about this question … all but shaming them into taking a step they may not agree with or that they are justifiably afraid of. It is complex, as the blog post above ably demonstrates.

What I will do is say a bit about how the topic of my disability came into my life. To start with, I cannot remember any single moment when I wasn’t aware on some level that I was “different”. I never was told flat out that I had a disability mainly because I don’t think I needed to. Maybe that’s because physical impairments are easier to identify, and more insistent in their interference with everyday life. Mine were, anyway. I’ll make a guess that the first conversation I took part in about my disability probably involved me, my father, and an Orthopedic Surgeon explaining why I needed an operation, or didn’t need one. I do remember a few other, more weighty and disturbing conversations with my father and mother … one or two after graduating from high school, and a couple after graduating from college. These weren’t about my disabilities per se, but variations on what is probably the usual “What are you going to do with your life / Isn’t it time you grew up?” conversations all parents have eventually with their kids. Only I do remember that my disabilities represented lengthy chapters in those discussions. The issue wasn’t whether I knew I had disabilities, it was whether I really had a clue what that actually meant beyond physical inconveniences and unusual health concerns.

No, I don’t feel like anything was hidden from me. I never actually experienced any shocking revelations that shook meto the core. However, in retrospect I miss some conversations about my disability that never happened, and I wish that some that did happen had happened earlier.

At least that’s what I think now. Who knows, maybe my parents really did do the best that they could, and things actually went as well as they could have. As they say, hindsight is 20/20.